Last Sunday, my oldest son came to town for a photoshoot. He hopes to build a strong website presence so that directors and casting agents consider him for future projects in musical theater. We made plans to eat lunch before meeting with the photographer. My youngest son joined me, and…

More than 80% of the men with severe hemophilia A treated with the investigational gene therapy Roctavian (valoctocogene roxaparvovec) in the Phase 3 GENEr8-1 trial remained bleed-free two years later, and nearly all were off standard preventive therapies. These findings were among new data presented at the recent 15th Annual…

Heart disease is the No. 1 killer of women. Yet all of the studies I found on hemophilia and heart disease have studied only men. But essential lessons for women are in these studies, too. Today, National Wear Red Day, which symbolizes support for women’s heart health,…

A sealed jar that no one can open. A faucet attachment that’s been screwed on too tightly. A piece of furniture that needs to be moved. These are just some of the problems we encounter at our home on a regular basis. And the one person who can solve them?…

In boys and men with severe hemophilia A, joint damage accumulates with age, and can be prevented if replacement therapy is started at a younger age, according to a small, single-center study in China. In addition, poor adherence to preventive, or prophylactic treatment was significantly associated with greater…

An experimental cell-based therapy using Sernova’s innovative medical device, Cell Pouch, safely and effectively increased the levels of factor VIII (FVIII) — the missing clotting protein in hemophilia A — and reduced bleeds in a mouse model of the disease. These are the findings of a study, “…

January is my three-year “clotaversary,” a holiday I celebrate every year after surviving a life-threatening situation during a major surgery. I have von Willebrand disease (VWD) and hemophilia B, and without treatment, I’m at risk for dangerous bleeds during surgical procedures. In 2019, I needed a radical…

A hemophilia diagnosis takes a toll on the social and mental health of men, who often feel misunderstood and excluded from activities such as sports, a Canadian interview-based study reports. While blood-clotting replacement therapies have improved quality of life, they can also be costly. Study participants highlighted the need…

Low-dose immune tolerance induction (ITI) — a type of treatment that can be used to eliminate inhibitors that limit the effectiveness of replacement therapies — achieved partial success in 80% of children with severe hemophilia A and high inhibitor levels, according to a recent study. The study, “…

Imagine you are in an emergency room with a life-threatening bleeding problem. How would you convince an ER doctor that you are a woman with hemophilia if they don’t think women with hemophilia exist? I have both von Willebrand disease (VWD) and hemophilia B, a less common form…